Global Programmes for the Control of
Haemoglobinopathies
Consultation Meeting for the Prevention & Clinical Management of Thalassaemia
25 – 26 April 2018
Nicosia, Cyprus
Dr Androulla ELEFTHERIOU
E X E C U T I V E D I R E C TO R – T h a l a s s a e m i a I n t e r n a t i o n a l F e d e r a t i o n
2030 UN NEW AGENDA
Sustainable Development
Eradication of Poverty
Nine (9) Global NCD Targets
One-third reduction in premature mortality from NCDs* by
2030
Achieving universal health coverage (UHC)
Providing access to affordable essential medicines and vaccines
for NCDs
By 2016, reduce risk factors for NCDs, building on guidance set out in the WHO
Global NCD Action Plan
By 2016, strengthen health systems to address NCDs through people-centered
primary health care and universal health coverage, building on guidance set out in
HO Global NCD Action Plan (2013-2020)
*Probability of dying from any of the diseases in the major four categories of NCDs (cancer, cardiovascular diseases, diabetes and chronic obstructive pulmonary disease) between the ages of 30 and 70
2030 Agenda for Sustainable Development: Targets for 2030
Commits governments to develop national
responses:
 Target 3.4: By 2030, reduce by one third
premature mortality from NCDs through
prevention and treatment and promote mental
health and wellbeing
 Target 3.5: Strengthen the prevention and
treatment of substance abuse, including
narcotic drug abuse and harmful use of alcohol
 Target 3.8: Achieve universal health coverage
(UHC) including financial risk protection, access
to quality essential health-care services and
access to safe, effective, quality and affordable
essential medicines and vaccines for al
1925 – 1960: The tip of the Iceberg
Global distribution and the malaria
hypothesis
Piel F et al. Nat Commun 2000;1:104; Piel F. Hematol Oncol Clin North Am 2016;30:327–341
Global Human Population Movement
Inherited haemoglobin disorders: An increasing global health burden
2015
2013
Sickle cell disease: a neglected chronic disease of
increasing global health importance
Chakravorty S & Williams TN. Arch Dis Child 2015;100:48–53
Global burden of sickle cell anaemia in children under five,
2010-2050: modelling based on demographics, excess
mortality, and interventions
Piel et al. PLOS Med 2013, 10(7):e1001484
2011
The inherited disorders of haemoglobin: an increasingly
neglected global
health burden
Weatherall DJ. Indian J Med Res 2011;134:493–497
2010
The inherited diseases of hemoglobin are an emerging
global health burden
Weatherall DJ. Blood 2010;115:4331–4336
2001
Inherited haemoglobin disorders: an increasing global
health problem
Weatherall DJ and Clegg JB. Bull World Health Organ 2001;79:704–712
6
GLOBAL
EPIDEMIOLOGY
OF HAEMOGLOBIN
DISORDERS
How
Howaccurate
accurateare
arethe
the figures?
figures?
About…..…
Hb Disorders
and numbers
March of Dimes Report(2008)
Cyprus Thalassaemia Association….
Blood Donation Coordinating Body (SEAD)….
Cyprus Population Screening Laboratory, 2015
Aims of managing haemoglobin disorders
ADULT THALASSAEMIA- A MULTI-ORGAN DISEASE
Optimum treatment is required for long survival and
good quality of life
 No treatment means early death in childhood
 Less treatment means poor quality of life and
premature death – this is the commonest picture on a
global scale
CHRONIC/NCD DISEASES
Do we have Political/ Policy Decision Makers’ Weapons?
Specific Resolutions on
Haemoglobin Disorders:
* EB118.R1 Thalassaemia and other
haemoglobinopathies (2006)
* WHA59.20 Sickle Cell Anaemia (2006)
CHRONIC/NCD*
Regional Strategy and plan of action on
chronic diseases (2006)
WHO Resolutions WHA66.10; 63.17; 61.14;
61.8; 59.20*; 59.25;
58.22; 57.17 ;57.16;
57.13; 56.26; 53.17
53.14 and EB118.R1*
UN Resolution: A/66/83 Prevention and
control of non-communicable diseases (2011)
Source: S. Fucharoen – 1st Pan-Asian Conference, Bangkok, Thailand, 2012
* NCD = Non-Communicable Diseases
ESSENTIAL FOR SUCCESS CONTROL PROGRAMMES UNDER
NATIONAL COORDINATION
AGE DISTRIBUTION OF THALASSAEMIA
PATIENTS IN CYPRUS
Cyprus in 2013
Source: Cyprus Thalassaemia Registry
0.2
1965
0.1
1975
1985
2005
1995
Years
0
Ποσοστό
Percentage
0.4
0.3
Changes in Age Distribution of
patients with thalassaemia followed
in the Greek University Thalassemia
Unit in the period 1965-2005
0
10
20
Έτη
30
40
50
Thalassaemia International Federation
The Thalassaemia International Federation is:
● Non-profit
● Non-governmental
● Patient/parent-driven
● Founded 1986 and registered
in 1987 under Cyprus Company
Law
Today:
● Governed by 18-member
Board of Directors
guided by a Constitution
– currently members
from 14 countries (2012)
TIF Membership
TIF Membership TODAY: 204 National Thalassaemia Associations
from 62 countries
EURO
Albania, Azerbaijan, Belgium, Bulgaria, Cyprus, France,
Germany, Greece, Ireland, Israel, Italy, Luxembourg,
Malta, Netherlands, Portugal, Romania, Spain, Turkey,
UK
AMRO
Argentina, Canada, Trinidad & Tobago, USA
EMRO
Bahrain, Egypt, Iran, Iraq, Jordan, Kuwait, Lebanon,
Morocco, Pakistan, Palestine, Saudi Arabia, Sudan,
Syria, Tunisia, UAE, Yemen
SEARO
Bangladesh, India, Indonesia, Maldives, Nepal, Sri
Lanka, Thailand
WPRO
Australia, Cambodia, China PDR (including Hong Kong
SAR of China and Taiwan Province of China), Malaysia,
Philippines, Singapore, Vietnam
AFRO
Algeria, Mauritius, South Africa
12%
5%
12%
28%
Correct April. 2018
7%
Pillars
of
Work
Delegation Visits (1993 – 2018)
150 in 52 countries
(Meet, Discuss, Prepare Consensus/MOU Documents)
Objectives:





Investigate/Follow-up
Distribute Of Educational Material
Develop Networks/Collaborations/Partnerships
Undertake Projects
Participate/Contribute/Organise Educational Events
(National Level)
 Provide Ad Hoc Consultations
Meet with:
Official Health Related Bodies/Authorities
 Medical/Patient/Parent Communities (disease and nondisease specific)
 Other NGOs (Health and/or Humanitarian-related)
Educational programme (1993 – 2015)
Publications
24 books published, and/or translated and distributed
worldwide
For patients, parents,
For healthcare professionals
For the community at large.
 13 books translated, published and
distributed (10,000 in 22 countries)
 3 new versions of existing Guidelines
The Global Impact of TIF
Guidelines for the Management of Thalassaemia:
 Used in 57 countries
 11,000 copies distributed
 Translated in 14 languages
 Adopted by EHA & National Haematology
Associations in 48 countries
“Quality Care is
our Priority”
The Global Impact of TIF
The face of thalassaemia
Then
Facial
deformities
Minimally treated patients aged 8 and
20 (Cyprus, 1940s)
Photos with permission (Modell and Berdoukas, 1984)
Now
PATIENTS’ JOURNEY
A1. AWARENESS
NATIONAL REGISTRY
A2.
Treatment
A4. SPECIALISED REFERENCE SERVICES
(Specialised knowledge)
Responsible to initiate
and co-ordinate
management
(adolescence)
PATIENT
BT
IC
FOR SUCCESS
•Political
Commitment &
Resource allocation
•Strategy  A
(management) and B
(Prevention)
•Public/Private
Partnership
A3. ADULT
HAEMATOLOGIST
Research
(specialized knowledge)
Networking
Co-ordinate specific and multidisciplinary
Psychosocial
care
IM
Regularly updated
Liver
MRI
PATIENT
Radiologist
Endocrine
Cardiac
•Consultation (second opinion)
•Research
•Clinical Trials
•BMT
•Multidisciplinary Care (in collaboration with treating medical specialists)
•Safeguard the quality and patient safety
•Collaboration with national health authorities
•Collaboration with research and reference centres regionally and
internationally
B. EFFECTIVE PREVENTION (NATIONAL LEVEL)
•Awareness
•Screening
•Prenatal diagnosis
•Counselling
TIF AT COUNTRY LEVEL
PRIORITISATION at National Level/
Political Commitment (but no holistic national
programmes):
Advanced StageMostly on Management
Under serious consideration:
(Less on Prevention-except P.R.. China)
AFRO:
EURO:
SEARO:
Algeria
Bulgaria
Thailand
EMRO:
Albania
Indonesia
Pakistan
Turkey
Sri Lanka
Morocco
EMRO:
EURO:
Palestine
Russian Federation
Iran
Azerbaijan
Lebanon
SEARO:
Iraq
India
Syria
WPRO:
UAE
P.R. China
KSA
Egypt
ONLY NINE (9) COUNTRIES
Tunisia
HAVE IMPLEMENTED COMPREHENSIVE
AMRO:
CONTROL PROGRAMMES:
Brazil
Trinidad & Tobago
EURO:
WPRO:
AMRO:
CYPRUS
SINGAPORE
CANADA
GREECE
TAIWAN
USA
ITALY HONG KONG
UK
WPRO:
Vietnam
In consideration, but very
limited action:
EMRO:
Afghanistan
Yemen
EURO:
Kazakhstan
Kyrgyzstan
Uzbekistan
Tajikistan
SEARO:
Myanmar
Nepal
Bangladesh
What they said:
“We are very much aware of the
important work which is being done by
TIF all over the world … we are looking
forward towards new collaborative
developments”
- Representative of WHO European
Regional Office
- Professor George Stamatoyiannopoulos
Medical Geneticist
University of Washington
‘TIF has successfully focused attention
on patients’ equal rights to high quality
care , building a global thalassaemia
family’
-Thalassaemia Association Ninava
Iraq
Thank you for your attention
Contact Us!!!!
Tel: 00 357 22 319129
Fax: 00 357 22 314552
Email: thalassaemia@cytanet.com.cy
Website: www.thalassaemia.org.cy
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